Being in Control: Personal Budgets and the New Landscape of Care for People with Learning Disabilities

Abstract

A central element in the shift to a ‘personalised’ care system in the UK is the opportunity for disabled people to hold and manage budgets for the purchase of care and support, to replace local authority services. The delivery mechanisms of ‘Direct Payments’ and ‘Individual Budgets’ have allowed many disabled people to control their care and support better, and have promoted their social inclusion. However, the particular contexts and issues for people with learning disabilities in holding personal funding have been little considered. The paper sets out the broad themes of the introduction of personalised care, and examines the limited use by people with learning disabilities of Direct Payments and the subsequent development of Individual Budgets. The paper considers the challenges to the nature, spaces and relations of care commonly used by people with learning disabilities that personal budgets present, in particular for those with more severe disabilities. The paper concludes by suggesting ways in which people with learning disabilities can use personal budgets, whilst maintaining the collective relations and spaces of caring desired by many.

Empowerment and personal assistance – resistance, consumer choice, partnership or discipline?

“…Critics fear that it will favour the articulate, informed users and point out that for example the particular contexts and issues for people with learning disabilities have been little considered. In the UK, such a criticism has been marked against the direct payments models which are a main ingredient in the arrangement with Individual Budgets for disabled people (Hall 2009;Wilberforce et al 2011). Critics fear that persons with competence and capacity to manage the arrangement will be favoured while collective care services provided by the local authorities and which are desired by for instances persons with learning disabilities will be replaced or undermined.…”

Personalising Support through Communication between People with Intellectual Disabilities and their Support Workers

“…Personalised support for people with intellectual disabilities is intended to place them at the centre of decision-making about their lives and promote their self-determination in terms of how they want to live and receive support (Christensen 2009;Christensen, Guldvik & Larsson 2013;Christensen & Pilling 2014;Fisher et al 2019). A personal budget is a funding and support model that can facilitate implementation of personalised support (Hall 2009). It consists of allocated money to a person based on an assessment of their needs and is intended to empower them (Christensen 2009;Horsell 2020).…”